Lise and Jaden

Jaden is six years old and an incredibly outgoing and inspirational little boy. He is proud of who he is and tells people “I have Spina Bifida” with a great sense of pride and as if they were missing out on something special. He’s not afraid to say what he thinks and stands up for himself. I think he does a great job of changing people’s perceptions of disability.

He was born with Spina Bifida and a rare condition called VATER Association. He has had to endure countless tests, procedures and surgeries, but manages to maintain an incredibly positive outlook on life.

Despite encouraging Jaden to live an independent and full life, it is not without its challenges. Apart from dealing with his many medical conditions, the most stressful and time consuming aspects are not his actual physical disabilities, but many other things that come with raising a child with a disability.

It’s getting a bit harder to lift him as he gets older. He is a very bright child so we do need to motivate him to use his walker – it’s not long before he figures ‘Why use the walker when its easier to get round in the wheelchair?’

I do need to wear multiple hats – the therapist who has to make sure he does his exercises on a daily basis (even when he doesn’t want to!); the advocate who is continually fighting for the best medical treatment and the equipment he needs; the personal assistant who has to regularly make phone-calls and emails to make sure he’s getting his appointments, or applying for funding, or searching out and hiring support carers; the driver who spends hours in the car taking him to endless appointments, therapy sessions and surgeries. There is always something that needs doing and all of this can be exhausting, on top of trying to spend time together with the whole family.

We first went to CCS Disability Action when we were looking for Jaden to go to crèche. He was just over a year old. They put us in touch with a fantastic crèche that really welcomed him - he was just one of the kids and settled in relatively quickly.

People are often amazed at how well we seem to cope with it all. But we do have our hard days and do get really tired.

Having support is critical. I feel that if we always had all the support we needed then life would certainly be much easier, and we would have more time to enjoy our children and all the wonderful things they bring us.